Hi Jools, I have posted previously that I’m taking Daridorexant which I think may be a new version of Suvorexant?? I’ve been taking that now since April and my RLS does seem to have calmed down recently. I am definitely getting more sleep than before. I started on 50mg but am trying to manage on 25mg per night. I have not used any sort of dopamine meds previously.
I am also upping my iron intake at the moment but ferritin levels still comparatively low (I’m going to raise a separate post on that to ask for some guidance) at 60, so assuming it’s probably not the iron that is making the difference to the condition.
Daridorexant (brand name Quviviq) is the same class of drug as suvorexant (Belsomra) - they are both orexin antagonists, however they are different medications. There is also a newer orexin antagonist called lemborexant (Dayvigo).
Presumably your test for serum iron was in the morning when its at its highest so probably even lower at bed time? My mum's is 68 ug/L (after 30% drop past 6m), as measured in morning. I believe her RLS is due to low iron (also down 30%) and ferritin, due to her ckd 3.
I am also taking Quviviq (Daridorexant) and was taking 25 mg changed to 50 mg. Now I am also cutting the 50 mg tablets in half. I am hoping that the content of the orexin antagonist is the same throughout the pill, so when I split them, I am actually getting 25 mg. Anyway, I appreciated hearing that you are also using it for RLS and insomnia. Marsha
My former rheumatologist actually wrote to my GP and recommended quivicin which is the same thing. My GP says it’s still restricted to specialists but should soon be available through GP’s. He will prescribe it for me then and hopefully it’ll be helpful.
I had to push my GP quite hard to get a prescription of Daridorexant (Quivivic), but now get it on repeat prescription. There is no follow up I simply manage it myself and learn LOTS from everyone’s helpful input on this forum. I am definitely better with them than I was without.
Joolsg well timed thank you.I have an appointment with Prof Walker on Friday. My annual review. I was going to ask about my broken sleep due to Buprenorphine.
I have been refered by my GP to a neurologist, but no appointment yet. I was going to ask him to prescribe 0.4mg of Buprenorphine for my RLS as my GP wont/cant. Are you saying it caused you issues with your sleep?
Thanks for the information Joolsg, I’m sure it would be helpful for a lot of members who post that Buprenorphine induces insomnia. I must be very fortunate as I have no such problems with sleep now I’m on 10mg 7day patches, actually the opposite is the case as I can very easily nod off late afternoon.
Good luck to those wishing to try it, must be awful to have relief from RLS through medication but still can’t sleep 😭
I recently asked my psychiatrist who oversees my psychotropics, including my sleep medication, for his thoughts on this new class of sleep meds and his feedback from patients he has prescribed them to. His experience with orexin success was moderate, about the same as administering hypnotics like Ambien. These new meds are expensive and insurance companies here in the states make it difficult to access them. I've been with my psychiatrist for 25 yrs. I once asked him, out of all the conditions he encounters which is the most difficult to treat?. Without hesitation he said insomnia. (As i sheepishly glance at my thick patient file on his desk).
And zolpidem (Ambien) is WAY cheaper. I’ve never had any problem with a tiny dose of Ambien when needed (travel, stress, excessive tinnitus). No tolerance either, for me at least.
Thanks for this, Joolz. My surgery has started to ration Zolpidem and Zopiclone, which I had been taking in permutation for Bupronorphin insomnia. I shall chase up Suvorexant.
I do not take suvorexant, however, I have been using Quviviq which is also an orexin receptor antagonist. It is non addictive and really works well to put me to sleep. It helps my insomnia, but sometimes my restless legs still activate, and I take a hot bath with Magnesium flakes. (I have both insomnia and restless leg syndrome). I see someone else is also taking daridorexant which is the same as the brand name Quviviq. It costs me a big copay because my medicare supplemental only covers a portion of it. It is the best non addictive medication so far for me. Good luck with it and I hope it works for you. Marsha
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